My name is Tania, I am 16 yrs old and my doctors believe I have LHPS (although they are still checking for other possible diseases). I live in a private athletic boarding school miles away from my family and am finding it extremely difficult to get through this health issue by myself. Although I know my parents don’t know what I’m going through neither does anyone at my school, my friends, my roommate, or any of the staff members. I feel very lonely and alone at school. The pain is so unbearable and I am always scared for it to return. I’m tired of being curled up on my bed in pain or on the bathroom floor throwing up. I have been to the hospital many times and sometimes the reason for my pain is very obvious (kidney stones) but other times there seems to be no reason for all the pain, and this is when I start thinking I’m crazy or that it is all in my head.
I don’t want to let people know what is going on, although it is hard to hide it. I feel bad for them when they see me sick or and pain and are unable to do anything, they are unsure what to do to help (there is nothing they can do). I have let this disease run my life, not because I want it too but the pain limits what I can and cannot do. And I don’t want to involve my friends because then I’m dragging them into a problem that’s not theirs and a burden that they should not be carrying. But at the same time I wish there was someone there to hold me when I shake and cry in pain.
ABSOLUTELY NO ONE UNDERSTANDS THIS. My friends don’t understand, they’re telling me to be more positive but it’s so hard to be positive when you’re in so much pain and have gone through so much. If they want to try my life and see if they can be positive at all then they can switch lives with me. I try very hard to be positive all the time about my health situation but sometimes its too overwhelming and I break down and cry. I just wish there was someone who understands. Can you help me?
Hi guys,ive set up a website that you might find useful,everything you need to know on lphs,also has links to various suport groups,check it out http://www.livingwithlphscouk.fatcow.com
Hi, my son was diagnosed with LPHS this year. I feel bad for him because every time he would play soccer he would start having episodes and then after a couple of days it would end, so he had to stop soccer. Later he tried swimming…nope, had to stop that too. He even went to bible camp and when he came home he told me he had blood in his urine again and back pain. So, after countless dr’s appointments and a trip to UCLA…we still didnt have an answer. Well after the report came back from UCLA my son’s PCP dr, sent a refferal to a nephrologist…BINGO! The “neph” was a bit awed since LPHS is more known in women, but there are some males who have this. Unfortunately, my son is no longer able to be active in anything he enjoys, but since this is something new, we are able to control it by, no physical anything and mild pain meds. So far so good. I thank all of you for sharing your story and I pray that things will stay stable for all of you.
Just to let you all know that besides pain meds the only thing that has helped me is my chiropractor. He uses heat, lasers, pressure points, adjustments and stimulation on me. I was in pain constantly for 9 months til I started going to him. My nephrologist thought it was a good idea to try it since nothing else worked. I started going 3 times a week and even more if I had horrible pain start on one of the other days. I’ve been doing it for 6 months now and only go once every couple of weeks or when the pain starts up really bad. It has helped tremendously. I recommend everyone find a good chiro who is willing to work with you on your kidney pain and try it for at least a month. It took it several weeks going 3-4 times a week til I saw a difference but it just keeps getting better. I haven’t had to take to the bed in about a month. The rest of my body feels better too.
Please give it a try.
My daughter and I both have LPHS.She is 16 years old. It has recently been diagnosed, and we are unsatisfied with the options for her. What helped you through?
I was diagnosed with LPHS at 16, I am now 18. I know how much it sucks. I wish you luck and if you have any guestions or just need someone to talk to feel free to email me at loveandpeace4200@yahoo.com
I dont know if anyone uses this , but im 19 and have lphs too. its awful, drs dont take me seriously because of my age, nobody knows what its like unless you have it too. im so drugged up alot of the time, i dont sleep and cant even function properly, if anyone wants to email me its erinrose@windowslive.com . X
hi taniamy name is kirsteen and i’ve had lphs for 6 years. i know its hard being away from family when your going through incredible pain. if you want to ask me anything about lphs then please feel free to contact me
totaly_tweety@hotmail.com
always keep your chin up
kirsteen
Honey, I hear you I have been in pain since I was 18 I am now almost 29, and they still don’t know what is wrong. What I can say is that every step you take that gets you closer to your diagnosis, is a step WORTH taking. Some days I just feel like the world is going to close in around me. But don’t hide in your pain, don’t let it consume you. You are not the pain, you are not the depression, you are not the anxiety, DO NOT let these things define who you are today, yesterday, or tomorrow. I am a person that thinks about the beauty in the simplicity of life, I have several different techniques that I use to try and manage my pain, but the one thing that really has taught me to just keep going is a few quotes that I carry close to my heart, they may not change anything for you, but some days it makes it a little easier to pull up the boot straps and keep on truckin.
“Those who turn out the best are those who make the best of the way things turn out”
Watch your thoughts, for they become words. Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it becomes your destiny.
You could be someone that changes the course of medical history and could save millions of other teens from going through what you go through daily. I know it is not fair, far from it, but when life hands you lemons, you go find the tequila and salt, ya know?
I hope I gave you something….
HI,
I have had this since last year and yes , I know what you mean. No one gets it and most think you can carry on after the odd pill. I know this may not be the same for you , but mine is worse in the evening and after food and especially after anything with spice in it …like curry or chilli or even peppers. i try to keep to a bland diet and drink loads and whilst the pain still comes daily…it passes a little quicker now. If I have the spices etc…its huge and I am climbing the walls. I find that if I get into a routine of what I do, it comforts me a bit and I can wait for it to pass. I have a heat pad and position to sit or lie in…even one to stand in and sometimes just sitting on the loo helps a tiny bit…in my head I reassure myself it will pass. Thats all we can do and I know its not much, but just remember that every time it hits you…the chances are I am rocking about as well thinking about you!
Annie